There has been some talk around the UK special needs blogosphere about a recent report that suggests parents may be pushing for special needs diagnoses when these are not needed. The report is poignantly called “Hooked On Labels”. It points out that many teachers feel that pushy parents are responsible for unwarranted learning or behavioral difficulty diagnoses. The report does not ask for parents’ views and did not ask anyone to quantify how many parents might be working the system to gain diagnoses their children don’t need.

I understand both sides of the issue. My father used to work at a secondary school with at the time around 1500 students. Of these, at one point, 139 had a formal dyslexia diagnosis. At the time, it was thought that only 1% of the population have dyslexia, hence suggesting a serious overdiagnosis. I just googled it and found current estimated prevalence rates as high as 17%. Assuming that reading ability runs on a bell curve, this would indicate that those only one standard deviation below the norm would be classified as dyslexic. Now I have no clue whether reading ability runs on a bell curve, but if a disability occurs in as many as 17% of the population, in my opinion, it can barely be called a disability. This means the system is failing, not the student. Either that, or parents are being pushy.

I find it interesting that parents are automatically blamed for overdiagnosis of learning or behavioral difficulties. Some teachers surveyed for the report suggested parents were working the sysstem to get accommodations for their children. Some even said perhaps parents wanted these children to enter into more competitive education which they otherwise would not have been able enough for. I do believe there may be some parents who get their children labeled with disabilities in order for them to be able to compete. However, doesn’t that mean that schools are just too focused on competition rather than individual differences? If you need a diagnosis to get your idnividual strengths and weaknesses recognized, isn’t that the problem rather than parents seeking that diagnosis?

I have always, ever since I first self-diagnosed with autism in 2002, believed that, if a child doesn’t cope, either the child has something going on or the system is screwed. I have always advocated for more individualized educational programming, but this doesn’t happen yet.

Mind you, I disapprove of parents seeking labels for their child – or adults seeking a label for themselves – just so they can get into special ed, collect disability benefits or the like. That’s not fair and if it happens, it needs to stop. This is however talking extreme examples. With how restrictive the special education and benefits systems are these days, I don’t believe many people would be able to fake themselves or their children into them. Where accommodations at home or at school are concerned, I don’t think anything is wrong with demanding them. Like I said, the need for labels to qualify for them, is the problem.

Some people see me as “working the system”, too. They don’t deny that I’m disabled – they can’t deny my blindness -, but they do deny that I’m as disabled as I claim to be. I asked for a second opinion when I was given a diagnosis that by some is perceived as meaning I misuse the system. Now dependent personality disorder is a genuine mental health condition, not willful behavior, but even my psychologist has some trouble seeing that. Treatment for DPD is not a kick in the behind to solve your own shit, but even my psychologist has some trouble seeing that, too.

In my case, the DPD diagnosis resulted from the same flawed logic that might get parents to seek learning or behavioral difficulty diagnoses for their children: the need to always have a label to explain every single need a person has. The occupational therapist from the blindness agency said my difficulty making tea wasn’t due to blindness. Another occupational therapist said it wasn’t due to motor difficulties. My psychologist assumed there are no executive functioning diffiuclties, so it wans’t due to that either. Since there needs to be some explanation, my psychologist decided to consider it a sign of dependence and to label that dependence DPD. As a side note, my husband tried to make tea with his eyes closed and it was way harder than it is with his eyes open.

I am often told that I desperately want to be different and that’s why I seek an autism diagnosis. I do see myself as different indeed, but I don’t need an autism diagnosis for that. There’s “highly sensitive”, “introverted”, “intellectually gifted”, and probably others that don’t require a shrink. I don’t even seek an autism diagnosis specifically – I seek recognition of my impairments.

Like I said, I have always felt that, if I fall through the cracks with the support I do get, either something’s wrong with me or something’s wrong with the support system. If blindness could get me the support I need, I wouldn’t have sought a mental diagnosis. For your information, it wasn’t me who sought my first autism diagnosis in 2007. They were professionals working with the blind. If I am just a lazy, unmotivated fatass who willfully misuses the system, I shouldn’t even get a DPD diagnosis – the label for that is malingering.

Back to pushy parents. It is my firm belief that there are as many parents who ask for labels their child doesn’t need, as there are parents who deny their child labels they do need. The solution to both is individualized support.

When I signed up to participate in Blogging Against Disablism Day 2014, I originally intended to write a semi-academic post on what it means ot be disabled and who can identify as such. Then I read Kees Kooman’s Dutch book on chronic fatigue syndrome (ME/CFS), which is aimed at advocating the idea that ME/CFS is a physical rather than psychological illness. Fine with me – there is a lot of evidence that ME/CFS is a physical illness. What bothers me, however, is the idea, propagated throughout the book and in many other places within the chronic illness community, that a physical illness is somehow more real than a mental illness.

I have a mental illness. I also have largely unexplained physical symptoms, which the doctors for now call probable irritable bowel syndrome. IBS, like ME/CFS, is an illness with clear physical symptoms which however have not yet been explained. This doesn’t mean no explanation will be found – many cases of “hysteria” in Freud’s era were later found to be brain tumors, after all.

However, what if IBS and ME/CFS are actually psychological? Does this mean that we don’t want to get better, as Kooman continually suggests. In my experience, living with a diagnosed mental illness, it doesn’t.

I see this kind of ableism towards the mentally ill everywhere. I have met many autistics who resist the idea of autism as a psychiatric diagnosis. While again I am on their side, their arguments discriminate against the mentally ill. It isn’t like mentally ill people always need to be pushed into independence, while autistics and others with neurodevelopmental conditions need lifelong support.

In case you’re wondering why I care, here’s why. The Dutch Long-Term Care Act, which is due to take effect next year, originally excluded those with psychiatric conditions (which I’m assuming includes autism without intellectual disability) from care. People with mental illness needed to get care and treatment through health insurance and locally-funded social support. The mental health platform, supported housing alliance and some other stakeholders fought this exclusion and it seems now that those who’ve been in residential treatment for at least three years on end, will qualify for long-term supported housing. I would qualify under this condition, but the large number of revolving-door patients, who are constantly being admitted, discharged and readmitted, wouldn’t.

The mental illness means not wanting to get better idea also has practical implications for treatment. People with certain mental illnessses, like personality disorders, are already stigmatized for being just a pain in the butt. I have been told many times that I’m manipulative, attention-seeking, and just having behaivor problems that I need to overcome. Of course it is wrong to assume the same of ME/CFS and IBS patients, but why in the world do they need a physical cause for their illness to claim they’re truly suffering?

Let me make it very clear that I’m not saying that ME/CFS is all in your head. I’m saying that if it were, that still didn’t mean you don’t want to get better. Symptoms are real, whether they’re psychological or physical and, if physical, whether a medical cause can be found or not. As a person who has been accused of imagining a mental illness, I want to say that, unless someone is malingering (ie. faking for external gain), it doesn’t matter what the cause of the illness or disability is in terms of whether it is a real illness or disability. Whether you strive for the illness or disability to be cured, by the way, doesn’t determine whether you’re ill or disabled eihter, but that is beyond the scope of this post.

In a chronic illness Facebook group I’m part of, a member talked about having “possible hypchondriac” written in her medical records. This led to a discussion of chornic illnes, hypochondriasis and illness anxiety, as hypochondriasis is now called in DSM-5, medical knowledge, imagining or faking symptoms. There are a lot of prevailing myths about health anxiety, which I feel compelled to write about.

First, this person had a known chornic illness. The DSM-5 criteria for illness anxiety disorder clearly state that, if a general medical condition is present or there is a high risk of developing such a condition (eg. strong family history), illness anxiety disorder should only be diagnosed if the person’s anxiety is clearly out of proportion to the medical condition. Also, the criteria say that people with illness anxieyt usually suffer no or only mild somatic symptoms. I am not sure how to interpret this, as everyone suffers somatic symptoms at times, and the DSM-IV specified that hypochondriacs misinterpreted real bodily signals. That’s not the same as somatic symptoms, I believe. Anyway, for these reasons, it is pretty unlikely that a person who has a known chornic illness, can be diagnosed with illness anxiety disorder.

Another prevailing myth is that knowing a lot about medical terminology indicates you’re ahypochondriac. Well, in such a case all doctors ought to be hypochondriacs. Also, talking, writing or reaidng a lot about illness is not a symptom of illness anxiety disorder, unless it’s accompanied by anxiety about having the acctual illness. I am not a hypochondriac for reading blogs about medical disorders that I don’t have. Yay!

Making up symptoms or creating them is also not hypochondriasis. People who fake illness to take on the sick role have a factitious disorder (aka Münchausen Syndrome). People who fake illness for secondary gains (eg. disability benefits), are malingering. These two need to be differentiated: factitious disorder, even in its harmful forms (ie. Münchausen by proxy), is a real mental illness and should be treated as such. Malingering is not. Doctors still have a hard time diagnosing certain cases of malingering due to having sympathy for the faker.

Lastly, please remember that having or being perceived as having a bad attitude about your health or illness, is not hypochondriasis. People deal with chronic or serious illness differently, and most of this falls within the normal range. Where it becomes distressing to the patient, it may be illness anxiety disorder (or depression or another mental illness). Being a pain in the butt for other people, may be too bad, but it’s not a psychiatric disorder.